Tuesday, November 27, 2007

Dark, Update

It was - it is - a positive screen for Down's Syndrome. It's a risk-assessment screen, not a diagnostic screen, so it's not conclusive - and I know that I need to focus on the fact that it's just about odds, that false positives happen all the time, that further testing isn't as scary as it seems, that it could all be fine - but still, it's not a happy thing. Not a happy thing at all. It's a dark cloud hanging over my head now, and even though I know that dark clouds don't always end up dumping buckets of rain or hurling thunderbolts upon your head, I still don't like them. They block the sun. I need the sun. So badly right now, I need the sun.

I need to crawl under the blankets for a while to process this. Thank you all so much - from the bottom of my heart so much - for the endless waves of love and support.

145 Comments:

Anonymous said...

oh catherine i'm so sorry to hear that there is a problem with sprout....i don't know if this will give you any comfort but God doesn't give us more than we can handle...sprout will i am certain bring you great joy and happiness. with my last 2 pregnancies my doc wanted me to go for an amniocentesis and of course i refused. i am so sorry that you have this to worry yourself about.a great big hug and i know the other moms will be able to make you feel better.love to you and yours LAVANDULA

I had the same experience when I was pregnant with my son. Talk about a dark cloud being cast... In the end, we decided not to do the amnio because we didn't think the results would influence our decisions regarding the baby. We just decided that whatever happened, we would handle it. That's one of the toughest decisions we ever made. Turns out, everything was fine in the end. But by the time we found that out (when he was born), we were already OK with the idea that maybe everything wouldn't be. OMG, it's so hard...

I'm sending lots of love and prayers your way. I am a frequent visitor of the high risk ob and every visit there were at LEAST 3 or 4 nervous ladies getting further downs testing. through the two pregnancies Ive been with that particular office i never saw a single one of those ladies again meaning that everything was just fine. I am hoping hard that everything is just fine for you and sprout too.

I'm sorry, HBM. The same thing happened to me with Isaac--they gave me 1 in 13 odds that he would have Down Syndrome and then at the level 2 ultrasound they found a soft marker. At that point they all basically told me to prepare for the worst. I had an amnio, and 10 days later, all was okay. All that torment for nothing! I will hope and hope and hope the same thing happens to you.If you have a CVS, at least you'll find out sooner, I was almost 20 weeks when I had the amnio and that was a nightmare. (I've had a CVS, too, and it's not that scary, I promise.)

I'm sorry I missed the earlier post. I can't even to begin how you are feeling, but my thoughts are with you and your family. Things could turn out to be OK, but I know that doesn't make you feel any better now. Grab another blankie for a little more comfort.

We had something similar happen at this time in our pregnancy too. Only ours was a + screen for trisomy 18. Our chances were 1:62 for it.

We went for the Level 2 ultrasound (and found out it was a boy and got a MOVIE- very nice) and only one marker was seen (choroid plexus cysts). We couldn't do an amnio because of the placenta placement and so had to come back in a few weeks for ANOTHER Level 2 ultrasound. Again, no markers and the choroid plexus cysts were resolving (oh, and another movie! Score!) so we decided no amnio.

Our reasoning for skipping the amnio was: everything looked fine on the ultrasound (other than the cysts that had no negative health issues attached). So we (ourselves personally) would not consider terminating the pregnancy, even if the amnio/chromosomes showed a problem.

It might have been different if he had spina bifida, severe heart and abdomen defects and hydrocephalus, but he didn't. Choroid plexus cysts show up in 3% of all healthy pregnancies and just aren't a problem. They resolve naturally by 25 weeks and cause no issues with learning or anything. So there really wasn't a reason to do the amnio for us.

I can honestly say WAITING for that first level 2 ultrasound was hard. Luckily they got us in after only a few days. But those 5 days were VERY long.

So I'll keep you in my thoughts, and hope that you just get the gift of a nice long (videotaped!) ultrasound with no problems found at all.

It's just no fun to be pregnant anymore. The testing, testing, testing, screening and more screening. Usually just to scare the bejesus out of expectant mothers. It has happend to me twice for two different reasons, I'd kick that clouds ass for you if I could.

I'm so sorry you have to go through this. I too, know people who've had positive test, only to have the docs tell them later that it was wrong. Also one friend was sure her daughter was going to be born with Downs and she wasn't.

We too had this experience (after the triple test) with Amelia. We had multiple ultrasounds after this test due to a couple of brain cysts which were additional markers. But the brain cysts shrunk and she was born perfectly healthy.I just kept reminding myself that it was going to be ok, no matter the outcome. This way I was able to prepare myself and educated myself in the case that things did not turn out the way I wanted them to. (I did not opt for a Amniocentesis, due to the risk.) Along the way, I read many stories about what blessings children with Down Syndrome are. There are many parents out there that can offer support.I am so sorry you have had this news. Try and think positive. You will be ok.

It could be a false positive. It happens. But whatever you decide to do (more testing, amnio, etc) I'm thinking of you guys. I'm kind of lacking the words to accurately say how concerned I am for you right now because I know how I would be feeling.

Hi there....the EXACT same thing happened to me with my second pregnancy. Hopefully they have scheduled you for another more detailed ultrasound, and then you can get the answers you so desperately need.

Everything was fine with us, but I TOTALLY understand how you are feeling right now.

The exact same thing happened to me as well. But I had the amnio done because we already have a child with special needs (autism) and I wasn't sure I could handle DS on top of it. I couldn't have even told you at the time if I would have gone through with terminating the pregnancy. I just had to KNOW. The amnio, though, gave us wonderful news and my little sweetie pie is now a sweet (albeit fiesty) two year old. Hang in there.

These tests suck. When we went through this exact same thing, we wondered more than once if it was maybe better not to have the tests... for us everything turned out fine, but getting those test results was hell. Would it have been better to have never known?

BTW, my OB called me at work and told me over the phone that my husband and I should go for genetic counseling... not the way I'd want anyone to hear such news.

I haven't had this exact same thing happen to me, so I can't offer any comfort on the turmoil you must be suffering right now. I have, however, had two CVS tests...everything was fine despite the "risks" and I was able to relax for the rest of my pregnancies. If you are early enough, go for that test rather than wait for an amnio. That is, if you decide to pursue further testing. I tend to see things a bit differently than many women and I embrace all of the advances in medicine and prenatal testing that have come along in the last 20 years or so. The chances of miscarriage are very, very slim, so if you really, really need to know, then you should at least consider it.

Oh, honey. I remember that time, with Sunny, and how scared I was. I cried and cried and cried. Then, I just stopped, and had some sort of peace, because I knew what I wanted to do with the information I had. We were firm that we didn't want to do amnio, because for us we would not have chosen to terminate for that reason, so we did about a dozen level II ultrasounds instead. My ultrasound during the nuchal translucency test was fine, it was just the bloodwork that increased our odds. Frankly, I now think that the damned bloodwork is probably influenced by what you eat or solar flares or something, but our daughter is genetically normal. I haven't forgotten the fear, though.

I wish you strength while you decide on a path of action, and peace with your decision. Feel free to email me if you want further information on our experience - I'll tell you anything you want to know.

The worrying is the worst. I had a some scares with a couple of my pregnancies and the not knowing was always the hardest part because your thoughts are in such limbo. At least once you know you can direct your thoughts to either being thankful for a false alarm or preparing yourself for a child with a disability. Just as many of your commenters have posted odds are good that this is a false positive and I've got my fingers crossed that the sun will be shining for you soon.

I wish I could send you some sunshine...but it's cloudy here, too, dreary and gray, and I'm not even pregnant and I don't have worries about my baby on my mind.

What I do have is a child with Down syndrome, and two other children also. I write about our family at my blog Pinwheels (http://jennifergrafgroneberg.wordpress.com) and if you like, check it out. I hope it will help put your mind at ease, until you learn more.

(Also, for what it's worth, I'm in the camp that thinks these screens are ridiculously inaccurate...)

I wish I had the words to tell you how much I am thinking about you right now...I've been wondering all day how your appointment went. It sounds like a LOT of other women have been through this, and you've got a lot of support here. Many virtual hugs coming your way.

sorry but can someone please tell me what a level 2 ultrasound is.is it like bio-physical profile of baby?my youngest was extremely high risk and i had to have bio physical ultrasounds done every 2 weeks.so is it the same thing?thanks LAVANDULA

I am so sorry to hear that. I refused to take that test after 2 people I knew got false positives on it. I do remember when they sent me to a specialist 2 hours away for a more detailed sonogram because of some concerns with my original sonogram. I cried for days waiting for that sonogram. It all turned out fine. I pray this will be the same for you.

I have a wonderful 2 1/2 year old brother with Down syndrome. Having a child with Down syndrome is not that bad of a thing. My brother brings so much joy and love to our family, we wouldn't change him for anything!!

No, we didn't know prenatally that my brother would be born with Down syndrome, but it wouldn't have made a difference. He's still a person, he just has a little extra.

If your baby does have Down syndrome, there is hope and a whole wonderful world out there! There is alot people with Down syndrome can do, despite the dark, uninformed diagnosis that most doctors give.

Feel free to email me at qf@gotdownsyndrome.net or my mom at kim@gotdownsyndrome.net

~ Qadoshyah19 yr. old sister to a wonderful boy with Down syndrome! http://gotdownsyndrome.blogspot.com

So this was a case of failing the Tripe/Quad Screen? I wish you had mentioned that before. Many, many mothers are opting not to have that test done for the sole reason that false positives are SO common. We had probably 4 or 5 failures of that test in our August 2003 baby group, and every last one of them turned out to be a false positive. I still think people should have it done, but just know it is a very, very unreliable test.

Oh man, I don't know how to "get right" with test results and waiting... I can only imagine that this is painful news, regardless of the outcome. With my son, I did some visualization which helped. I just tried to see his little face, kiss his little smile, tickle his wee toes. I think it really reaches in there and does some good, for both of you. You and Wonderbaby and HBF are a great team, and you have a sweet little Sprout in there, lovin you bigtime. All kinds of big love coming to you from nashville. xoxo.

I have been where you are and it is no good place to be. Thinking of you, and hoping with fervent hope that they're wrong, that the odds are in Sprout's favor, and that this is merely a bump in the road.

There is nothing I can say to take this away, but from the most sincere part of my being: I wish you strength and good things. I wish you peace and great further test results. I wish you sleep at night. I hope with all my heart that Sprout is just fine. xx

My OBGYN with my first pregnancy was also a TEACHER of obstetrics, and he HATED those tests.....he said he'd dealt with more false positives than anything else and that it created a lot of unnecessary fear and heartache.I'm assuming you had the initial blood screen, and not an AMNIO.....which is what I'm referring to.Unfortunately/fortunately amniocentisis tends to be correct but the initial blood screening they do and ultrasounds both give off a lot of false positives.So take a deep breath and think good thoughts.

I don't know how to comment on this process of waiting, because back in the day, they didn't run all these tests and you might not know until you delivered.

My youngest has a developmental disability similar to Downs. She's now 17 and a very unique and loving individual. I am a better mother and human because of her. I also left the corporate world to work for an agency that does disability services because it was the right thing for me to do... to know how to help her.

I know it's not an easy process when the diagnoses and discussions begin... "Is there or is there not something wrong with my child?"

I won't say something trite like "you'll be okay", but should the tests be accurate, you can and will develop the tools to help your child succeed, and you'll become a wonderful advocate for your child.

I'll be sending you all of my best thoughts as you work through this process.

Try to remember, even when clouds are present, the sun is always there. No matter what the outcome, you are going to make it. You are going to love that baby no matter what the tests tell you. We are going to love little sprout too! I hate that you are suffering in that place of "not knowing", that part will be over soon.

Try to remember, even when clouds are present, the sun is always there. No matter what the outcome, you are going to make it. You are going to love that baby no matter what the tests tell you. We are going to love little sprout too! I hate that you are suffering in that place of "not knowing", that part will be over soon.

I admit - I do not know what you're going through. I was blessed with uneventful pregnancies (except for all the puking).

But I do know what it is like to wait for a diagnosis. To wait to hear whether this child - that you love so much - might struggle with things others take for granted.

My son does have special needs and that diagnosis was very difficult to process at first. But now it's just a part of our lives. I don't know that I would change it even if I could - because there is something magical in the way Gabe sees the world.

I am still praying and hoping that Sprout is absolutely fine. But I wanted to let you know that even "worst case scenario" might not be so bad.

Catherine, I will say a prayer for you and little Sprout that it is all a "misunderstanding" between the test and the doctor. Ok, trying to put a light-hearted spin on it a bit. I have a child with multiple disabilities and while I love him with all my heart and would do anything to help him, I wouldn't willingly wish it on another mom.

That said, let your fear fuel you to learn more by reading Jennifer GG's blog (among many other wonderful ones out there) and finding out more from other moms. If you know there is the slightest chance, prepare yourself with knowledge.

My dear friend gave birth to a baby boy just a year ago, and he has Down Syndrome. She sent out the most amazing and wonderful email about him immediately, and has been proactive and involved in learning as much as she can. That little boy is the light of their lives, her two older children dote on him, and he's doing magnificently.

It would be easy to say "Oh, I'm so sorry..." I guess I ache for those in uncertainty, for those worried that life will be hard for the baby and child and adult he or she will become. But every child, every parent, faces difficulty; some adversity is better researched than other problems, but Down Syndrome is not a death sentence. It's not probably something a person would choose for their child, but my cousin, my friend's son, and many others I know with Down Syndrome are amazing, funny, talented and wonderful people who enrich the world.

Another lurker here, decloaking to send support and concern. I had amnio with my daughter as I was 36. I was very frightened of the test itself, but it was no big deal at all.

Also, I support your right to choose whatever is best for you and your family. Obviously we all hope and pray that this is a false positive, but if it's not.... I'd advise that you turn to your family and your doctor and your beliefs and spirituality, not necessarily the internet which already seems to be trying to influence your decision.

I should probably qualify what I said with the information that he's now 9 and we didn't have any genetic testing whatsoever because at the time I was 24, but did have a CVS on my three subsequent pregnancies.

Oh, Catherine, I am so sorry that you and your family are going through this hell of waiting and wondering...

But hopefully the multiple stories here of false-positives will perhaps lighten your heart a tiny bit this week... It is so true that the ultrasound is simply a risk-assessment, and by no means conclusive. When my own Child Number Two's ultrasounds looked irregular, and my doctor expressed concern, it was my dear old dad (an old-school gp) who took my hand and told me to have faith and not jump to conclusions too soon... And my little girl is now a perfectly healthy and happy six-year-old.

My personal feeling on further screening is to look at it as a marvellous opportunity to prepare for things to come. How wonderful to be able to get a glimpse into the future, and to be able to make informed decisions.

If I could, I would give your hand a big squeeze, Catherine. I have faith in you and Sprout!

Oh Catherine -- this sucks! And of course there's so little one can do. Someone dear to me went through this and had an amnio, then went through the next phase of waiting for the result, which were good. Even so, nobody else's story helps, not really. All one can do is accept the love and concern of those around us (in your case so very many people) and if inclined, say, or seek from others, prayers and good thoughts. Mine will certainly be with you.

I'm sorry that after months of sickness you are now facing this time of worry and fear. I can't add any more than what's already been said above. I'm thinking of you, all of you, and am hoping with all my might that everything turns out okay.

I know you're sick with worry right now and nothing said here will change that. I just wanted to add my voice to the many that is hoping for good news and sending out good thoughts for you. Prayers, too, if you believe in them.

I'm sorry. I know this is scary.You're in my thoughts and prayers. if it helps, my pregnancy this time has been filled with scary moments - and they have turned out okay.At least so far. Take the time you need to think all this stuff through, and remember that like so many people have said, there are a lot of false positives - and this is just a preliminary test.

Hi Catherine - no matter what anyone says, you will still worry, just as you would worry if you had a feeling that not everything was "normal" with Wonderbaby. You can't help it. Nothing I can say will make you feel better, but know that many of us are thinking of you, praying for you, and wishing for a positive outcome to all of this. ((HUGS))

I just did a CVS last week, since I'd rather know for sure and DNA don't lie. I also live in a major metropolitan area where they commonly perform this procedure, so I wasn't worried about the risks associated with it. However, we did decide what we'd do with the results before I did the test.

I'm sorry you're going through so much stress and worry because of this.

Although I know it won't help ease the worry, it is only an early marker, and the odds are still in your favor. In some ways, I hate those early screenings, because they cause far more stress than relief.